This Is How I Balance Being a “Patient” with Being a “Person”

Health and wellness touch everyone’s life differently. This is one person’s story.

The week after I was diagnosed with multiple sclerosis in 2008, I went to my local bookstore.

I located the “Medicine” and “Alternative Medicine” sections, and camped out. Books were pulled out and laid open, strewn all along the aisles of each section. When someone would dare to start down one of those aisles, I’d shoot them a look that stopped them in their tracks and sent them on their way.

I buried myself in information. And that continued when I got home.

I’d see a link on Facebook about MS that looked really interesting and click on it. Then, another click. Click, click, click, click…

Before I even knew it, my eyes would be all red and puffy, my head would be pounding from lack of sleep, and I’d have so many more questions than when I first started.

We’re so lucky to be living in an age where so much information is available — literally at our fingertips. But it’s also really easy to become buried by information. It can become overwhelming and, frankly, debilitating.

I’m learning, but am I living?

The quandary of allotting time to research, and actually living, is one I think most of us who have chronic illnesses can relate to. Certainly when you’re first diagnosed, the primal drive to learn more about this mystery invader in your body is practically impossible to ignore.

As a patient advocate, healthcare writer, and podcaster, it’s imperative that I stay on top of all the latest research, findings, and viewpoints.

But I’m also a patient — a warrior, thank you very much — and it is literally detrimental to my mental and physical health to sit and click and read and wonder and worry for too long.

When the information begins to change me

Of course, the dangers of falling down the information rabbit hole go beyond just the physical factors of sitting for too long and losing valuable time. More information also means more thinking about the future — and worrying.

And how can you help but worry? The information can be downright scary! The “what-if’s” haunt me late at night, and before I know it, my mind is clouded by the word “should”:

“I should eat better.”

“I should exercise more.”

“I should get more sleep.” (Thinking this while lying in bed definitely doesn’t help).

“I should quit drinking.” (OK, this last one’s never going to happen. Seriously? I have MS, and sometimes a glass of wine is all the fun I have energy for!)

And when it’s really bad, and I’ve whipped myself into a full-on frenzy of worry, I notice the rest of my life starts to spin out of control, as well. (Guess what? Stress affects mood.)

I’m generally a very upbeat, optimistic person. Some would say I’m a bury-your-head-in-the-sand kind of optimist. But denial has worked very well for me — I’m Cleopatra, Queen of Denial! I’m that person who wakes up happy every morning and cheerily says “good morning” to my two teenaged daughters, much to their eternal disgust.

But when I’ve immersed myself too much or for too long in the bottomless pits of medical research, the whole family feels it. I’m not light and happy. I don’t jump out of bed with a smile. I’m contemplative. I’m quiet. I’m thinking about the “what-if’s” and the dark side of MS.

This darkness bleeds into other areas of my life. I’m not as productive at work. I snap at my kids and my husband. I’m angry when my dogs want to sit in my lap.

Ugh. That’s no way to live.

False promises and false hope

Losing our objectivity and falling for false prophets is another byproduct of rabbit hole research.

You’ve seen them: the videos on YouTube extolling the virtues of a treatment, or a doctor, or plant extract, or a drink-water-from-a-glass upside-down “cure” for MS. When you’re feeling desperate and overwhelmed, you’re susceptible to these scams.

I have a friend who fell prey to this. Years ago, she spent some time learning about stem cell therapy — then in its infancy for MS. She had just transitioned from relapsing remitting MS (RRMS) to progressive MS, and was at her wits end. She had “tried everything” and nothing was working.

She was a prime target for “the hype.”

She found a stem cell therapy center, spent an inordinate amount of money, and saw no benefit. She said she lost her objectivity because she so desperately wanted it to be true.

The dream of a life free of MS — it’s hard to resist at least trying out these supposed treatments, even when from the outside they’re obvious scams. And it’s even easier to do when you spend too much time “learning” and not enough time actually living.

Limiting myself to “bytes”

To stop myself from going down the rabbit hole completely, I have to be deliberate in my “deep dives” and limit myself to bites (or bytes!).

How do I do this? By sticking to a routine.

Everything else in my life is scheduled — exercise, rest, other ‘happy’ rabbit hole times — think Netflix and Pinterest! Everything is set up on my calendar, with reminders. (They’re tough to ignore.) I schedule both a start and stop time just to give myself some parameters, for scheduling beyond just that activity.

And I now do the same thing with research.

I’ll “allow” myself some time each day to do a fairly deep dive, but when that time is up — usually because I have something else scheduled right after — I have to walk away. I keep a “research” document right on my desktop with URLs of sites and articles that I think are interesting or could be of benefit, and simply check them out later.

I’m not advocating that you bury your head in the sand and pretend that nothing’s happening. Rather, I suggest scheduling the time you spend doing deep dives, and staying within those bounds. Perhaps allow yourself to “research” one day a week, or for an hour every day. Whatever both satisfies your desire to stay up-to-date, and helps you maintain a positive mental outlook in the here and now.

And when you feel yourself slipping back into those tendencies — check yourself! Learn to notice the warning signs and move away from the screen when you do.

How to identify the rabbit hole

If you’re feeling unsure about how to recognize — and respond to — too much research, here are a few questions to ask yourself:

Are you missing chunks of time? Do you start your research and then find that hours have passed without you noticing?

Do you start “looking” and find yourself unable to stop?

Are you spending less time with people, and more time online?

Have healthy habits become less important to you? For example, do you eat in front of your computer? Are you getting less exercise than normal, or than you know you should?

Are you worried or do you have trouble sleeping because of the research you’re doing?

If you answered “yes” to any of these questions, you need to recognize the problem that this is causing in your life — and dial it down! Commit to scheduling your research time and making sure you’re taking care of yourself and engaging in healthy social interaction. You’ll benefit both physically and mentally.

Rabbit hole research can be detrimental to finding the help you need. Make yourself important enough to commit to limiting it. You will not only feel better, but you’ll actually be living — rather than just reading about living.

Kathy Reagan Young is the founder of the off-center, slightly off-color website and podcast at FUMSnow.com. She and her husband, T.J., daughters, Maggie Mae and Reagan, and dogs Snickers and Rascal, live in southern Virginia and all say “FUMS” everyday!